The guilt!

[JennaeClifford]

How do you all handle the guilt of cancelling your attendance at the last minute? I’ve had a very stressful week and I’ve come over extremely fatigued, feeling sick, my legs feel like jelly and I just want my bed. I’m supposed to be at my partners family’s house tonight for a firework party (ps they don’t really know about my Lupus as it’s seen that if they can’t see anything wrong with me I’m not “feeling that bad”), so I’m trying to put myself first and just rest but now I’m feel almost swallowed up by my guilt of not going! I feel like I just can’t win. Maybe a cup of tea in bed will make me feel better?!?!? Yours hoping for some tips 💕

[LupusKaren]

Oh Jennae, I just know your post is going to strike a chord with many, it has me. I do not have any tips per se, and if like me, you are sensitive to other people's feelings most of the time rather than your own, this situation is quite simply miserable.

Nobody likes to bail out of a commitment, social or otherwise. I have had my diagnosis for a few years now, and the bottom line is, you do have to on occasion be selfish. If you had broken both your legs, no-one would raise an eyebrow if you had to cancel plans. For me, especially with extended family and social occasions, I have had actually had said to me ' you look fine to us', and veiled comments of using illness as an excuse to avoid being social, that stings.

My way is I adopt a policy of not getting into trying to justify my reason for having to cancel plans, I simply say, I am very sorry, but my Lupus is active atm, and I am feeling unwell, and I need to rest, I hope you all have a wonderful evening. I will not get dragged into any justification conversations, and do not allow unsolicited medical advice, or guilt trip driven discussion to try to get me to change my mind.

Be firm but polite, and always remember, you are the best advocate for your health, you know what you can handle at any given point.

Anyone who kicks off about it, frankly the problem is with them not you. So enjoy the cup of tea, and I would have something very tasty to go with it, and good for you for thinking of yourself, it is hard, and can be tedious, I award you Friday evening Lupus Warrior Champion!

[JennaeClifford in reply to LupusKaren]

You LupusKaren have just made me smile so big! More than I have done all week, so thank you. Lupus Warrior Champion deserves a chocolate biscuit now too x

[Bronagh2015 in reply to LupusKaren]

Here here Karen!

[Lupiknits]

A cuppa, something yummy to go with it and a cosy bed could well be doctors' orders. We all have rheumies we love to hate but I doubt many would suggest that standing around in the cold looking at fireworks might help fatigue and sickness. It simply doesn't matter how " well" you do, or don't, look. There's always next year x

[Bronagh2015]

Hi Jenna, I did an article on living with lupus for a local magazine recently, this is a section of it,

"I really look after myself and take an active role in my health care.

“I’ve modified my life the best I can and have learned to accept a new normal.

“I care less now about those people who believe because I can look well I am well.

“I’m no longer embarrassed to admit I need a sleep every day and sometimes I need to sleep all day.

“I make no apologies for my forgetfulness and poor concentration due to brain fog.”

Now I have to admit this hasn't come easy, I've lupus over 20 years now, but it is so wonderful to reach this stage, so please DITCH THE GUILT and give yourself a slap (gently!) on the back for putting your health first.

[JennaeClifford in reply to Bronagh2015]

It’s replies like this that make me so grateful for this forum. Thank you so so much x the guilt is still with me but my chocolate digestives are helping x thank you again

[jvspeed in reply to Bronagh2015]

Well said 😊

[SHEILWEIL in reply to Bronagh2015]

Yes, good for you! Me as well! I've had lupus for 20 yrs and I'm 54.

I just finished recovering from my 2nd complete cervical spine reconstruction. Two 8 he surgeries 8 bolts 8 plates and a rod later. I had a great deal of time to think about everything and everyone. They kept going and I later in bed for close to 14 month. If it wasn't for my 2 fur babies(dogs) Max 9 yr old lab mix and Fig 5 lb chauaua. I'd have lost my mind!

Hang in there and always remember, set boundaries and pace yourself 😘

[maggielee]

Lovely feedback & a good reminder to myself to follow this advice as well...to late for me for a biscuit, but will toast you all with my cup of tea 😄 ml

[Hidden]

I’m the king of guilt

[AgedCrone]

Just say you've picked up a bug & you don't want to pass it on.....then go to bed & rest..........you might think the firework party is a big deal.....but honestly nobody else will think twice. If what I suggest was told to you......neither would you!

I know how awful I used to feel cancelling at the last minute, but real friends Will not hold it against you!

Anyway...this occasion isn't something like being a bridesmaid, or doing something only you could do is it....so chill! S top stressing & look after yourself!

[Gcart]

Sometimes a friend may comment to my husband , having made some excuse if I am not with him ,' oh she looks well' . He didnt know how to deal with these remarks.

Anyway I suggested that he could reply with ' aw you should have seen her before this, she was amazing '

I thought it was a good retort anyway 👹😁